It’s Like Whatever

The roller coaster ride continues. This one kind of loops back to before my transplant. I guess I kind of forgot what caused the diagnosis of PSC. I hadn’t thought about it. I had bigger things going on.
After rejection the first week of June we’ve been playing the “right cocktail” of antirejection meds game. Since rejection was so severe I didn’t go back on tacrolimus. They originally switched me to everolimus. I didn’t realize it until about a month after being home, due to high doses of prednisone more than likely, that I was so swollen. From my head to the tops of my knees. My doctors kept blaming the prednisone. I knew it wasn’t that. It felt different. I was so uncomfortable. Couldn’t raise my legs to get up the two steps on to our porch. Couldn’t move my head side to side. Couldn’t fit into any of my clothes. I could literally see and feel the nodes in my armpits, back & neck. They were huge. Since I wasn’t getting any answers I researched it myself. I found some cases of everolimus induced truncal lymphedema. I was looking in the wrong places. I was looking under transplant situations. This medication is a chemotherapy drug as well so I started looking into that side of it and found so many incidences of truncal lymphedema caused by everolimus. I was told in many groups that sometimes it wears off by itself once the med is stopped. Sometimes it doesn’t and you’re stuck with it for life. I knew I needed to see my family doctor. They always have my back and they know me well. She knew after examining me that it wasn’t the prednisone causing all of this. I mean come on, I’ve been on prednisone on and off for the last 18 years. I knew the difference. She sent me to a lymphedema therapist. After my first visit I felt better. I learned a ton about the lymphatic system as well. I saw her about 10 times, twice a week. I would feel better until the next day. I learned how to do the massage therapy on myself and continued it at home. Along with a raw diet and exercise. After talking to my hematologists at Hopkins again they agreed to switch me to sirolimus as long as I took CellCept along with it. This all while still continuing a very slow taper of prednisone. My body loves the sirolimus/CellCept combination!
So at my 6 month post hospitalization recheck we discussed all these medication changes. My kidney functions were normal (they hated the tacrolimus). My sirolimus level was almost the same on every blood draw. And at this point the lymphedema is almost gone. I feel normal again. I actually feel the best I have felt both physically and mentally in years!
But then my doctor brought up Crohn’s. When she did I remembered I never got the chance to follow through with my GI docs at Geisinger about that. After my ileostomy surgery they had told me that they needed to go over all of my records because they weren’t sure if I had ulcerative colitis or Crohn’s. So I called my doc there. My fingers were crossed so hard that it was ulcerative colitis because that would mean I was cured. All I would have to deal with the rest of my life would be post transplant stuff and the possibility of recurrent PSC. But, it was definitely Crohn’s as part of my ileum was involved. I didn’t think hearing that would crush me all over again but it did. It was like hearing the diagnosis for the first time all over again.
So now as we continue tapering prednisone we need to pay attention to see if I have any Crohn’s symptoms. The symptoms are very similar to PSC. I’m currently down to 5mg of prednisone. I haven’t been lower than that. I’ve been on it since transplant. If we can get it stopped successfully then we will attempt to stop the CellCept as well. Then I will only be on the sirolimus. One medication! One! Of course I’m staying positive. It will happen!
But now…my sirolimus level spiked so they changed my dose of that. 4 months of it being consistent and now it wants to act up. If I didn’t have to take any medications, therefore no side effects, I wouldn’t even know I had a liver transplant. I know this roller coaster ride will never end but lately it’s been the boring ride, like the kiddie coaster, and I can SO handle that shit!